Bewildered

valb115
valb115 Member Posts: 13
edited 2. Sep 2010, 08:08 in Living with Arthritis archive
Had initial appt with Rheumy nurse this morning and am at a loss as to what the point of it was.
I had my diagnosis of seronegative RA two weeks ago and the consultant prescribed Sulphasalazine and discussed side effects and implications with me then. Rather than give me the medication at the time I had to make an appt with the nurse for a counselling session at which point I would get the drugs.
The "counselling" consisted of the nurse taking out the Sulphasalazine leaflet published by Arthritis Research and reading it to me. I can actually read myself and have read that particular leaflet several times already:x.
When I attempted to ask questions that related to me personally (ie: might there be any implications for my severe, but well controlled asthma) the nurse told me that she was there to counsel me about the side effects of Sulphasalazine which she then proceeded to read to me again!!
Unbelievable.
is this what I have to look forward to now? Being patronised by medical staff who won't/can't answer my questions? Has any one else had to have a nurse appointment, and have there been more positive and constructive experiences than mine?
Hmm. Just read this back. I am very recently diagnosed and I think the angry phase may have kicked in :?

Comments

  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Oh val!

    I can't believe that you were given an appointment for counselling about how to take sulphasalazine :shock:

    no wonder you felt patronised, especially having it read out to you:roll:

    I have never heard of this happening to anyone else. :? although I did have to see the specialist nurse when starting Mtx injections, but that was more about self- injecting advice.

    In one way it is good that your rheummys have time to go through meds with each patient but this seemed a bit 'over the top' especially as the nurse couldn't answer your very pertinent questions about asthma and this drug. :roll:

    hope after all this that sulpha helps the arther.

    Iris x
  • robertls
    robertls Member Posts: 2,580
    edited 30. Nov -1, 00:00
    I saw Rheumy nurse when I started Mtx, Sulpha, and Leflunomide.....

    Same nurse each time, and she was great.......

    Told me what I need to know, do and don'ts.....and answered all of my questions and concerns..

    Without the need to read the label......

    Lets hope your future appointments are more positive.....

    Rob x a045.gif
    Roba045.gif
  • frogmorton
    frogmorton Member Posts: 26,667
    edited 30. Nov -1, 00:00
    Hi Val

    I reckon you just got a rubbish nurse there me duckie.

    They are not all like that at all :roll:

    You might be going through the angry phase and if you are that's quite normal BUT I think i ouwl have been angry at being patronised and having my time wasted too :roll:

    Grrr!!!

    Hope you do ok on teh sulfa.

    Love

    toni xx
    Love

    Toni xxx
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Val

    You have every right to be feeling angry after seeing that nurse. What a waste of time and what a waste of space that nurse is too. :roll: I know from reading other posts on here that most nurses are great and know what they are talking about but it seems obvious to me that this particular nurse knew nothing except how to read. Of course patients are going to ask questions, that is what the appointment was for. I sincerely hope that she is not the nurse that you can phone up with any questions you may have in the future.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • angie1973
    angie1973 Member Posts: 248
    edited 30. Nov -1, 00:00
    I think I would feel the same too. It's not nice being treated as if you are stupid. You have an illness, you have not lost your ability to think or feel or communicate, so it's patronizing to me when they assume you are obviously too stupid to understand.

    That and when they use big words to impress you, I always love that one too, since most of us are internet savvy these days, we tend to know a lot of the words to describe ones conditions.

    Hope that you don't get her again if she's as helpful as that to everyone!

    Take care hun.
    Ange..xx
    _______________________

    Only 99.9% possessed by the giggle monster.........the other 0.01 % just eats chocolate..
  • salamander
    salamander Member Posts: 2,028
    edited 30. Nov -1, 00:00
    hi Val, I've got sero negative arthritis too. My nurse was great on the first appointment when she answered all my questions but I have a lot of problems with the drug not working and illness etc. and find her very patronising every time I ring her. Part of it is her manner, which is weirdly both very formal and laid back and, by all accounts, she is a very good nurse ,but I've got to the point where I dread ringing her. Trying to get information out of her is like trying to get blood from a stone. Don't even bother to ring for my blood results as it seems too much to ask.

    I have managed to side step her a bit to another team of nurses in the infusion department as I now self inject Mtx. They are very friendly and easy to get on with and they answer my questions! I've asked to have my care formally switched over as I have to collect my drugs from them in any case.

    You may have more than one Rheumy nurse in your hospital so it is worth checking it out. It is very useful to have a good relationship with one, especially if you have problems like I do.
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
    Who on earth thought that you'd need to be read the sulpha instructions! I was just sent a leaflet through the post and got my prescription from the GP.

    Lets hope you don't have too many more dealings with that person. Good luck with the sulpha - I've been on it since January and it's done great things for me. Your wee will be bright yellow once you get up to 4 a day, but don't worry that's completely normal!

    Lois x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I have been on sulpha for years, and I too have asthma, tho that is controlled by inhalers, and it has never caused me any problems on the breathing front. I suppose nurses are dealing with a wide variety of patients, some of whom cannot read or may not be too bright, but one would expect her to be able to judge people better than she apparently did. I was never talked thro any of it, was just told to take the pills. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    I had to go to an appointment to see Rheumy Nurse to discuss how to take a couple of different medications.

    Like you, she didn't tell me anything in addition to the leaflet however I didn't tell her that as it pays to 'make friends' with the Rheumy Nurses as she gave me her phone number incase I had any problems with the meds.
    I haven't needed to contact her re meds however I have called her twice to see if she could arrange for me to see Rheumy Consultant before scheduled appointments and she was successful.

    When I went to these appointments she arranged for me I took her a box of chocolates as a thankyou for putting herself out by arranging them for me so further into her good books.

    So, I hear what you are saying however remember to utilise/exploit all tools to hand! :lol:
    Carol
  • valb115
    valb115 Member Posts: 13
    edited 30. Nov -1, 00:00
    Thanks for reassurance and wise words. Taking it all in :)
    Starting sulpha on Monday after weekend away 8)
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I've been on it since Jan 2002 and not had any trouble from side FX at all. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ichabod6
    ichabod6 Member Posts: 963
    edited 30. Nov -1, 00:00
    What was you input to the meeting?
  • valb115
    valb115 Member Posts: 13
    edited 30. Nov -1, 00:00
    Hi ichabod6,
    My attempts at input to the meeting were met with further readings from the leaflet! Looking back now it really was quite comical :lol:
    The nurse made it very clear to me that the appointment was for the nurse to talk/read to me and not the other way 'round.

    Your question does raise the issue of whether or not I could have been more assertive though, and on reflection I probably could. I'll keep reading all the lovely posts on this forum to pick up tips for next time :)
  • marion1952
    marion1952 Member Posts: 996
    edited 30. Nov -1, 00:00
    Hi Val

    What strange behaviour from that nurse!

    I hope there will be other members of the team that you can get advice from, if necessary..

    Best of luck with the Sulfa.. I know it works very well for a lot of people ..

    Marion
  • ironic
    ironic Member Posts: 2,386
    edited 30. Nov -1, 00:00
    Hi Val,
    I was told I had to wait to start meds until I had seen the Pharmascist! Trouble was nobody contacted me so I waited nearly 8 weeks before I rang up to ask what was happening. Yep they had missed sending out a letter to arrange the appt. After all that she just went through the leaflet with me. She did say they were sorry for the delay but when you are new to everything you dont know time scales of these things.

    Hey Ho such is life. :roll:

    Lv, Ix
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Ocht, that infuriates me so much to read your bit about the nurse making it clear to you that the appointment is for the NURSE to do the talking!

    We are all different, have different symptoms, different reactions, different questions, different circumstances therefore they NEED to listen to us.

    I feel the same about my Rheumy Doctor. She just goes through a form with me and woe betide me when I interrupt her. When I speak she actually tries to speak over me. She just has a set form of questions and that is it.

    It frightens me as a few months ago, if I hadn't actually spoken up telling her that I thought my symptoms were more like SLE (lupus) and not RA then she wouldn't have done the lupus tests and I would still be incorrectly diagnosed!

    Never be afraid to ask questions.
    Carol
  • ichabod6
    ichabod6 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hello Val,

    When you have a long term health condition the role of the
    health professional (and for this matter that includes nurses)
    is to partner with you and advise you of your prognosis and
    possible future treatment BUT you are the senior partner in
    this relationship. It is your body, your condition and you know
    more about that than anyone else despite their position in the
    healthcare scheme.
    I take your point that you may have been a little more assertive,
    well from now on be just that. You may step on the odd toe,
    but it should pay dividends.
    Take care.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I have just seen my nurse today and we always chat about things. I told her about feeling so sick with MTX and she gave me various options asking my opinion on each one. I am trying anti-sickness pills.
    She always has time for me even though I try to hurry because I am more stable nowadays and want to make room for the people new to arthritis as they have so much more need for questions and support,

    My nurse said she had a couple of spare appointments in September. Anyone?

    Elizabeth x
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein